Often children and other family members of patients with ALS end up being caregivers for their family, which can lead to isolation and a stressful life, reports WHYY. After Jodi O’Donnell-Ames’ husband passed from ALS, she decided to develop a camp-like program in hopes to help younger children who experience the disease secondhand, like her daughter did. The camp started in New Jersey and is expanding to several other states after it’s success.
ALS, amyotrophic lateral sclerosis, also known as Lou Gehrig’s disease, is a rare fatal neurological condition that leads to a slow progression of debilitation. The disease attacks one’s nerve cells in the spine and in the brain, which eventually affects their walking, talking and breathing. Roughly 15,000 people in America are diagnosed with ALS and many die within 2-5 years after diagnosis.
The camp was developed for children ages 6-21 and it gives them the opportunity to get an escape for a weekend. It allows them to be active and interact with other children who are experiencing a similar situation at home. More often than not, these children are isolated and do not have someone to talk to that can understand what they are going through firsthand, yet these camps are here to change that.
At the camp they often hike, rock-climb, do yoga, run around bonfires, engage in music therapy and more, all while meeting new friends and discussing strategies for handling these high-stress lifestyles. From the success of the camp in New Jersey, the camp will now expand to 4 other states including Florida, Massachusetts, California and Indiana.
O’Donnell-Ames hopes these camps can provide these children with a healthy and safe environment to cope. There is no other place that would allow them to laugh, cry and discuss their lives with like-minded people of the same age. Hopefully it will allow them the opportunity to release fears and anxieties.
O’Donnell has a goal to open up 9 or 10 camps in the upcoming years. Currently, these camps are funded by individual grants and donors.
